Advocacy for brain tumours

2019 ◽  
pp. 281-290
Author(s):  
Riccardo Soffietti ◽  
Christine Marosi ◽  
Roberta Rudà ◽  
Wolfgang Grisold

Brain tumours include different entities in terms of pathology, clinical characteristics, and therapeutic options; however, all represent an important cause of morbidity and mortality. The symptom burden of brain tumour patients is extremely high, and the different phases of the disease (at diagnosis, after surgery, during the adjuvant treatments, when progressive disease) pose specific problems to be managed. Rehabilitation, both at physical and cognitive levels, is increasingly required following the improvement of overall survival. The neurological complications of systemic cancer can negatively impact the quality of life of patients while cured from their primary tumour. Many aspects in neuro-oncology require advocacy. Among them, the cooperation between physicians, nurses, and caregivers, and an appropriate education of medical professionals on how to best manage brain tumour patients are the most critical. Moreover, we must work to guarantee the access for all patients to the best diagnostic and therapeutic tools by lobbying the Public National and European Institutions.

2021 ◽  
Vol 23 (Supplement_4) ◽  
pp. iv2-iv3
Author(s):  
Shumail Mahmood ◽  
Yazan Hendi ◽  
Hasan Zeb ◽  
Yasir A Chowdhury ◽  
Ismail Ughratdar

Abstract Aims Over 11,000 patients are diagnosed with a primary brain tumour annually in the UK, with many more being diagnosed with a secondary brain tumour. UK law stipulates that all individuals with a brain tumour must inform the Driver and Vehicle Licensing Agency (DVLA) and may be required to surrender their driving license depending on their specific tumour and symptoms. Despite this guidance, we found that patients continue to arrive at the neuro-oncology clinic without the correct DVLA advice being given. This can potentially lead to patients with brain tumours continuing to drive on the public highway, which poses a severe hazard as the risk of seizures could endanger the public. This retrospective study looks to review what information was provided to patients with brain tumours upon initial diagnosis and determine the adequacy of this; ultimately aiming to improve the quality of information given to future neuro-oncology patients. Method A structured questionnaire was designed, asking patients who have been treated for a brain tumour at the Queen Elizabeth Hospital in Birmingham about any information they received about driving when they were first diagnosed. The questionnaire comprised of 11 questions designed to gather an understanding of what information was given to patients about driving. The study secured local audit approval. 75 patients identified from the weekly neuro-oncology MDT list were contacted. All patients included in this audit were required to stop driving and inform the DVLA about their condition as per the DVLA guidelines. Their responses were collated and analysed. Using this data, we determined if there were inadequacies in the information that was given to these patients about driving, and how this process may be improved in the future. Results 60 patients (80%) possessed driving licenses when first diagnosed and 17% of these (n=10) were not told to stop driving; 8 of whom were diagnosed in primary/secondary care. 39 patients (65%) were first diagnosed in primary/secondary care, however, only 21% of these (n=8) were told to stop driving by primary/secondary care consultants. The remaining 31 patients (81%) were only told to stop driving after referral to tertiary care, by consultant neurosurgeons at the Queen Elizabeth Hospital. Conversely, of the 12 patients first diagnosed at the Queen Elizabeth Hospital, 85% were told to stop driving at diagnosis, suggesting a notable difference in informing patients between primary/secondary care and tertiary care. Patients also commented on the quality of the information received, as 10 individuals (21%) mentioned needing more information about getting their license back, and 5 individuals (11%) mentioning being given conflicting or incorrect information from different members of the MDT. Conclusion The results show that in practice, there are inconsistencies about mandatory DVLA advice which should be clearly provided to patients with a new diagnosis of a brain tumour. Only 78% of patients were told to stop driving at diagnosis, suggesting that the remainder could be liable to continue driving despite their diagnosis. Furthermore, many patients diagnosed in primary/secondary care are not being told to stop driving until after referral to tertiary care which can take weeks, causing delays in them being given this information, which can pose risks to themselves and the public. These delays may be alleviated by giving patients a simplified resource when they are first diagnosed which clearly explains the driving rules. We therefore propose developing a one-page resource based on DVLA guidance and distributing this to patients and referring healthcare professionals at first diagnosis. A subsequent re-audit can evaluate if this intervention improves the current situation.


2021 ◽  
Vol 23 (Supplement_4) ◽  
pp. iv3-iv4
Author(s):  
Elizabeth Vacher ◽  
Miguel Rodriguez Ruiz ◽  
Jeremy Rees

Abstract Aims Brain Tumour Related Epilepsy (BTRE) has a significant impact on Quality of Life with implications for driving, employment and social and domestic activities. Management of BTRE is complex due to the higher incidence of pharmacoresistance and the potential for interaction between anti-cancer therapy and anti-epileptic drugs (AEDs). Neurologists, oncologists, palliative care physicians and clinical nurse specialists treating these patients would benefit from up-to-date clinical guidelines. We aim to review the current evidence to adapt current NICE guidelines for Epilepsy and to outline specific recommendations for the optimal treatment of BTRE, encompassing both primary and metastatic brain tumours. Method A comprehensive search of the literature from the past 20 years on BTRE was carried out in three databases: Embase, Medline and EMCARE. A broad search strategy was used and the evidence was evaluated and graded based on the Oxford Centre for Evidence-Based Medicine Levels of Evidence. Results All patients with BTRE should be treated with AEDs. There is no proven benefit for the use of prophylactic AEDs, although there are no randomised trials testing newer agents. Seizure frequency varies between 10-40% (Class 2a evidence) in patients with Brain Metastases (BM) and from 30% (high-grade gliomas) to 90% (low-grade gliomas) (Class 2a evidence) in patients with Primary Brain Tumours (PBT). In patients with BM, risk factors include number of BM and melanoma histology (Class 2b evidence). In patients with PBT, risk factors include frontal and temporal location, oligodendroglial histology, IDH mutation and cortical infiltration (Class 2b evidence). There is a low incidence of seizures (13%) after stereotactic radiosurgery for BM (Class 2b evidence). Non-enzyme inducing AEDs are recommended as first line treatment for BTRE, but up to 50% of patients with BTRE due to PBT remain resistant (Class 2b evidence). Conclusion The review has highlighted the relative dearth of high quality evidence for the management of BTRE, and provides a framework for further studies aiming to improve seizure control, quality of life, and indications for AEDs.


2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii437-iii437
Author(s):  
Shelly Stubley ◽  
Anita Freeman ◽  
Christina Liossi ◽  
Anne-Sophie Darlington ◽  
Martha Grootenhuis ◽  
...  

Abstract BACKGROUND Childhood brain tumours and their treatment can reduce health-related quality of life (HRQoL) and cause anxiety and depression, withdrawal, and social isolation. Improved communication within outpatient consultations may allow early identification and treatment of these issues. We explored family communication needs in survivors of childhood brain tumours receiving six-monthly follow-up outpatient review within the English NHS. METHODS Semi-structured interviews were conducted with 18 families whose child aged 8–17 years had finished treatment for a brain tumour within the preceding five years. Thematic analysis used the Framework Method. RESULTS Adjusting to change and finding a “new normal” was the overarching theme to emerge. HRQoL issues included fatigue, coping with physical changes, challenges at school, isolation, and adjusting to changes in abilities. Survivors described a need for greater knowledge about and more support with changes in cognitive functioning. Parents spoke about the impact on the wider family and their changed role in supporting the child’s HRQoL. Communication barriers included short-term memory loss, shyness, and the need to suppress or regulate emotions evoked by these issues. Communication needs included more information regarding recovery and rehabilitation and/or help managing anxiety or emotional health. CONCLUSION The above communication needs and barriers should be addressed. Having a digital record to document and monitor this information systematically could improve service planning and provide patients and their families with the resources to reach their full potential and experience a better HRQoL.


2020 ◽  
Vol 20 (8) ◽  
pp. 1144-1155 ◽  
Author(s):  
Renato Cozzi ◽  
Maria R. Ambrosio ◽  
Roberto Attanasio ◽  
Alessandro Bozzao ◽  
Laura De Marinis ◽  
...  

Any newly diagnosed patient should be referred to a multidisciplinary team experienced in the treatment of pituitary adenomas. The therapeutic management of acromegaly always requires a personalized strategy. Normal age-matched IGF-I values are the treatment goal. Transsphenoidal surgery by an expert neurosurgeon is the primary treatment modality for most patients, especially if there are neurological complications. In patients with poor clinical conditions or who refuse surgery, primary medical treatment should be offered, firstly with somatostatin analogs (SSAs). In patients who do not reach hormonal targets with first-generation depot SSAs, a second pharmacological option with pasireotide LAR or pegvisomant (alone or combined with SSA) should be offered. Irradiation could be proposed to patients with surgical remnants who would like to be free from long-term medical therapies or those with persistent disease activity or tumor growth despite surgery or medical therapy. Since the therapeutic tools available enable therapeutic targets to be achieved in most cases, the challenge is to focus more on the quality of life.


Author(s):  
Alex J. Mitchell ◽  
Audrey Hopwood

A brain tumour is the most feared cancer diagnosis by the general public. Primary brain tumours account for about 1.5% of all new cases of cancer, and 2.5% of all cancer deaths. However, most brain tumours are, in fact, metastases from other cancer sites. Brain tumours cause considerable psychological and psychiatric complications, as well as a burden for caregivers, and hence a reduction in overall quality of life. Around 90% of patients will suffer neuropsychiatric complications, and in around 20%, these are the presenting symptoms. Neuropsychiatric complications often improve following brain tumour treatment, such as radiotherapy, but can also deteriorate. New therapeutic techniques have improved survival and are gradually improving quality of life. However, this is only effective if neuropsychiatric complications are recognized and addressed.


Author(s):  
V Charest ◽  
T Dao ◽  
P Morin ◽  
P Whitlock ◽  
D Charest

Background: Improving diagnostic and therapeutic tools associated with glioblastoma multiforme (GBM), an aggressive brain tumour, is crucial as average patient survival remains slightly over a year. Challenges include early diagnosis and acquired drug resistance. Improving these challenges notably require a multidisciplinary team and a dedicated brain tumour specimen collection initiative. We hypothesize that implementing such an approach in Moncton would provide significant benefits to GBM patients and researchers in New Brunswick. Methods: A Brain Tumour Tissue Repository was instigated to collect and preserve primary tumour specimens. Storage of circulating samples from patients undergoing temozolomide (TMZ) therapy was also performed. In parallel, molecular leads were investigated in different GBM models to identify therapeutic targets. Results: Collection of 7 primary specimens was accomplished in 2016. Over 15 primary samples are housed in the tumour biorepository to date with circulating samples collected from 3 patients. Additionally, numerous deregulated non-coding RNAs were identified by qRT-PCR in GBM models and shown to be modulated following TMZ treatment warranting further investigation. Conclusions: Overall, these results provide novel therapeutic leads for GBMs and, most importantly, highlight the instigation of a New Brunswick-based brain tumor biorepository which will undoubtedly strengthen brain tumour research in the Maritimes.


2020 ◽  
Vol 9 (3) ◽  
pp. 91-96
Author(s):  
Agnieszka Królikowska ◽  
◽  
Piotr Zieliński ◽  
Marek Harat ◽  
Renata Jabłońska ◽  
...  

Introduction. The location of intracranial neoplasms and the process of treating these lesions itself can significantly affect the quality of life of patients. Hence, the aim of the study was to investigate the impact of the location of the brain tumour on the quality of life of surgically treated patients. Aim. The aim of the study was to investigate the influence of the location of the brain tumour on the quality of life of surgically treated patients. Material and Methods. The study included 236 patients with brain tumours operated at the Department of Neurosurgery of the 10th Military Clinical Hospital with the SP ZOZ Polyclinic in Bydgoszcz. Patients with different tumour locations were included: in the temporal lobe, in the frontal lobe, in the parietal lobe, in the ventricles of the brain and in the extra-cerebral locations. The following questionnaires were used to assess the quality of life: EORTC QLQ-C30 and EORTC QLQ-BN20, in which the patients were tested three times: on the day of admission to the Clinic, on the fifth day after brain tumour surgery and 30 days after the surgery. Results. Patients’ quality of life decreased in the early postoperative period in all groups in terms of tumour location, especially in patients with tumours of the frontal lobe (-0.104) and ventricular neoplasms (-0.109) (p > 0.05). On the 30th day, however, an improvement in the quality of life was achieved in all groups, the highest improvement was obtained in patients with tumours located extra-cerebrally (0.115) and tumours of the temporal lobe (0.097) (p > 0.05). Conclusions. There was no effect of the location of the brain tumour on the quality of life of the studied patients. In the early postoperative period, the quality of life decreased, while it improved 30 days after the surgery. (JNNN 2020;9(3):91–96) Key Words: brain tumour, quality of life, tumour location


BJR|Open ◽  
2021 ◽  
pp. 20210009
Author(s):  
Eva Yi Wah Cheung ◽  
Kevin Ho Yuen Lee ◽  
Wilson Tin Long Lau ◽  
Amy Pik Yan Lau ◽  
Pak Ying Wat

Objectives: This study aimed to compare radiotherapy plan quality of coplanar VMAT (CO-VMAT) and non-coplanar VMAT (NC-VMAT) for postoperative primary brain tumour. Methods: A total of 16 patients who were treated for primary brain tumours were retrospectively selected for this study. For each patient, identical CT sets with structures were used for both CO-VMAT and NC-VMAT planning. For CO-VMAT, one full arc and two coplanar half arcs were used. For NC-VMAT, one full coplanar and two non-coplanar half arcs with couch rotation of 315° or 45°. Dose constraints were adhered to the RTOG0614 and 0933. Dose volumetric parameters were collected for statistical analysis. Results: There were no significant differences for the PTV, HI, CN and μ between the CO-VMAT and NC-VMAT. For the brainstem, Dmean of CO-VMAT and NC-VMAT were 6.04 ± 3.94 Gy and 4.69 ± 2.56 Gy respectively (p < 0.05). For the ipsilateral OARs including temporal lobe, TM joint and cochlear, Dmean of CO-VMAT and NC-VMAT were 31.80 ± 12.78 Gy and 25.51 ± 17.54 Gy (p < 0.01) ; 14.12 ± 8.6 Gy and 3.35 ± 4.12 Gy (p < 0.001); 11.96 ± 11.68 Gy and 6.62 ± 9.74 Gy (p < 0.01) respectively. For contralateral OARs including hippocampus, temporal lobe, TM joint, Optic nerve, lens, eyeball and cochlear, the Dmean of CO-VMAT and NC-VMAT were 6.16 ± 2.44 Gy and 4.49 ± 2.00 Gy (p < 0.01) ; 6.48 ± 2.76 Gy and 3.68 ± 1.76 Gy (p < 0.0001); 11.96 ± 11.68 Gy and 6.62 ± 9.74 Gy (p < 0.01) respectively. Conclusion: The proposed NC-VMAT showed more favourable plan quality than the CO-VMAT for primary brain tumours, in particular to OARs located to the contralateral side-of tumours. Advances in knowledge: For primary brain tumours RT, NC-VMAT can reduce doses to the brainstem, ipsilateral temporal lobe, TM joint and cochlear, as well as OARs located to the contralateral side-of tumours.


Sign in / Sign up

Export Citation Format

Share Document